First of all THANK YOU to everyone for the prayers and well wishes today. We have truly felt your presence and it has given us strength to get through these past 2 days.
The appointment today was very good, better than we could have imagined. Yes, Rion is definitely having the partial sensory seizures again but it's not due to any of the causes we had speculated about. No swelling, no scar tissue, no tumor- the MRI was "stable" with no sign of change!! So...what is causing the seizures?? STRESS! Crazy, huh? But yeah, once you have a seizure you are per-disposed to having them again- they can be brought on by things as simple as lack of sleep, dehydration (which we are thinking played a part in Rion's most recent bout) as well as stress. Things have been pretty up & down these past few weeks and while Rion is a very laid back guy, his brain apparently didn't get the memo. But we thank God it wasn't any of the physical conditions that we has suspected. We are going to start searching for a psychologist that Rion can meet with to teach him some stress management skills as well as give him a non-biased sounding board to work through any stresses he wants help with. Along with therapy, it will be up to us (all of us) to make sure that we don't put too many expectations on him since feeling like he isn't "good enough" or "doing enough" seems to be a recurring theme. Rion is not the same person he was 9 months ago- he is not lazier or doesn't care as much, but doing even simple things takes so much out of him now because of the extra concentration and focus it takes. He just isn't able to take on as much as he could before and its hard to pick and choose when he wants to still go at the same (warped) speed as he always had.
The 2nd part of today's appointment was focused on how we are going to manage the new seizures. The increase in his Keppra to 3000 mg/day is working but the side effects are unacceptable. The fatigue & mental fog are not lifting as well as a general "off" feeling and an even harder time organizing and discussing his thoughts. So starting tomorrow we will begin gradually increasing his Vimpat, the adjunct seizure medication that was added in June and had successfully stopped all seizure activity until these break through seizures last week. Once that medication has been increased to 400 mg/day (is currently 200mg) then we will start weaning him back down on the Keppra to the 2000 mg/day he was on up until this past Saturday. The neuro-oncologist on call did not make a mistake by increasing his Keppra, Keppra is an amazing drug that has relatively few side effects and virtually no known drug interactions. The Vimpat on the other hand is a newer drug that isn't as well tolerated. But in our situation we feel that increasing the Vimpat is in Rion's best interest along with lowering the Keppra. It will take about 2 months total to make these changes to his medication which puts us right at our next appointment in October 31st where we will discuss with the doctor again how Rion is doing and make any additional changes as needed.
The last bit of (good) news- Rion should be all DONE with chemo in 2 months!! The oncologist said again today that he is doing as good as we could expect and there is no reason to continue on with treatment after he gets this 6 months under his belt. There is a chance that we might have to lower the dosage of the final two rounds because his platelets were down today lower than ever (52,000 & the previous record low was 60,000.) If they go below 20,000 Rion will possibly need a platelet infusion and will not be allowed to continue on the current chemo dosage. Additionally we need to watch his white blood cells and if they get below 1,000 (current low is 1700) then he will have to get a shot to boost his white blood cell production. Because of the compromised immune system (did not get the exact white blood cell # today but it's down from 2000 where it was last week) he is at a risk of a flair up of his shingles again so for now he will stay on the Acyclovir- the antiviral medication that he has been taking since the shingles started. We will also decide at our next appointment when he can stop taking that but it isn't harming anything and the complications from another shingles outbreak could be really bad.
So that's where we are now. To say we are relieved would be an understatement, Rion smiled today for the first time in a week and I am reminded again how wonderful and kind our God is if we remain faithful to him.
Emily
Wednesday, August 29, 2012
Tuesday, August 28, 2012
At Duke & return of partial seizures
What a crazy few days we've had. Rion had his blood work done last Tuesday and it was OK, down a little but that is to be expected. I didn't blog about it because it was pretty uneventful and I knew I'd be blogging this week about our trip to Duke.
Rion was doing really good until last Thursday when he started having partial seizures after 6 weeks of not having any. He didn't say anything to me about it until Friday when I got home from work because he was hoping they would stop. By then they were happening pretty frequently, every couple of hours. He took a good amount of his as needed seizure medication and was able to sleep soundly until 5 am Saturday morning. He was woken up by a seizure and within 45 minutes he had 3 of them. I couldn't just watch it happen any more so I called our local oncologist (following the instructions from Duke, we call the local doctors first with any problems and then call Duke if they are unable to help us.) The on call doctor was nice but he admitted he isn't a brain specialist and recommended we call our neurologist. Well we don't see them very much so I just skipped that step and called the neuro-oncologist on call at Duke. The good news is we got the seizures to stop, the bad new is that meant increasing his Keppra from 2000 mg/day to 3000 mg/day which is the maximum dosage. He started the higher dosage Saturday morning and only had a few seizures all day, by Sunday they had stopped completely. Unfortunately the side effects from increasing the Keppra are pretty severe. Rion is extremely fatigued, he is taking at least 1 nap a day and then sleeping at least 10 hours a night. The fatigue should subside over time but the mental side effects are what scares me. Rion has always been very positive & optimistic throughout this entire journey but I see his faith wavering now. Whether it be from the increase in Keppra or the seizures themselves, Rion describes the way he feels as "going crazy" or being "unable to collect his thoughts." It is slowly wearing him down and it worries me. While understandably apprehensive about tomorrow I am also so relived we don't have to wait any longer to get some answers about what is going on. Honestly if we hadn't had this trip planned already I would have brought him up here any ways. Something is definitely going on and the sooner we can get some answers the better.
So...the big question is: what happened to start causing these seizures? From my research I have come up with 3 plausible answers. First, and most UNlikely is that the tumor is already coming back. The neuro-oncologist I spoke with Saturday all but ruled that out since the MRI 2 months ago was clear. It is almost impossible for the tumor to come back that quickly & while actively taking chemo. My second theory is scar tissue from surgery has formed around the resectioning cavity. I am not sure what course of treatment would be taken to correct this problem but I couldn't imagine much could be done. My last theory is that Rion's brain has started to swell from the radiation treatment and the swelling is causing inter cranial pressure leading to seizures. As sick as it sounds this is what I hope will be the diagnosis. I am pretty sure they can prescribe steroids to reduce the inflammation and then back his Keppra back down. Of course those are just my thoughts and it could be something totally different. Either way, I just pray its something we can treat rather than just treating the symptoms.
So that brings us up to the present. We are sitting in a hotel room in Durham trying to relax enough to sleep tonight (something I have really been struggling with.) We will be at the hospital at 7:30 to start blood work & then on to MRI at 8:30 and the oncologist appointment at 10:30. Please pray for our nerves and the grace to accept whatever the diagnosis may be. I will try to update the blog as soon as I can. If you are on Facebook, feel free to send me a friend request as I often mention things on there before I have time to blog.
God bless!!!
Emily
Thursday, August 16, 2012
Sorry to be so neglectful!
Is neglectful even a word?
Anyway, we have just been really crazy busy and I haven't updated the blog in a loooooooong time.
Rion took his 4th round of chemo last week- Tuesday thru Saturday. He did ok while on the chemo but Sunday night it hit him really hard. He got confused and didn't take his anti-nausea medication after Sunday morning and once it was out of his system he was defenseless to the nausea/vomiting. It continued on into Monday and wasn't really until Tuesday that he started feeling better again and able to keep food/liquids down. I was really concerned about him Monday because he couldn't even keep water down and he got really fatigued being so ill. But after sleeping well Monday night he was in much better spirits (and hungry) Tuesday morning. Things have continued to improve steadily every day.
We are happy to report his shingles are all but cleared up! It looks like he might have some scarring that will hopefully fade over time. He is still taking the antiviral medication 2 times a day until we go up to Duke and they re-evaluate him.
Speaking of Duke, we are still on for our appointments on the 29th so we will travel up on the 28th as we normally do the day before. Please pray that Rion is able to get our Expedition fixed before then so we won't have to make the long drive cramped in my little car. Yes the gas mileage is much better in my car but both of us are more comfortable in the Expedition (and Rion has enjoyed napping just about ever trip up there!) We are anxious to get the MRI done and confirm that the chemo is working and the iffy spot continues to remain unimportant, or better yet, is shrinking. We are also hopeful that Duke will clear us to stop chemo after 6 months...that would only mean 2 to go!!
Next Tuesday is Rion's first blood work post chemo and we don't expect to see many if any changes. It seems like it takes closer to 3 or 4 weeks for his levels to start dropping. Maybe this time they won't though and he'll be able to take his next dosage on time in 4 weeks. He is ready to hurry up and get it over with, even if it means being sick as a dog for a few days. He had mentioned having Duke lower the dosage down after becoming so ill this time but I really think that if we stay on top of the anti-nausea medication he won't have to go through anything near as traumatic again.
God bless you all and thank you for the continued prayers!!
Emily & Rion
Anyway, we have just been really crazy busy and I haven't updated the blog in a loooooooong time.
Rion took his 4th round of chemo last week- Tuesday thru Saturday. He did ok while on the chemo but Sunday night it hit him really hard. He got confused and didn't take his anti-nausea medication after Sunday morning and once it was out of his system he was defenseless to the nausea/vomiting. It continued on into Monday and wasn't really until Tuesday that he started feeling better again and able to keep food/liquids down. I was really concerned about him Monday because he couldn't even keep water down and he got really fatigued being so ill. But after sleeping well Monday night he was in much better spirits (and hungry) Tuesday morning. Things have continued to improve steadily every day.
We are happy to report his shingles are all but cleared up! It looks like he might have some scarring that will hopefully fade over time. He is still taking the antiviral medication 2 times a day until we go up to Duke and they re-evaluate him.
Speaking of Duke, we are still on for our appointments on the 29th so we will travel up on the 28th as we normally do the day before. Please pray that Rion is able to get our Expedition fixed before then so we won't have to make the long drive cramped in my little car. Yes the gas mileage is much better in my car but both of us are more comfortable in the Expedition (and Rion has enjoyed napping just about ever trip up there!) We are anxious to get the MRI done and confirm that the chemo is working and the iffy spot continues to remain unimportant, or better yet, is shrinking. We are also hopeful that Duke will clear us to stop chemo after 6 months...that would only mean 2 to go!!
Next Tuesday is Rion's first blood work post chemo and we don't expect to see many if any changes. It seems like it takes closer to 3 or 4 weeks for his levels to start dropping. Maybe this time they won't though and he'll be able to take his next dosage on time in 4 weeks. He is ready to hurry up and get it over with, even if it means being sick as a dog for a few days. He had mentioned having Duke lower the dosage down after becoming so ill this time but I really think that if we stay on top of the anti-nausea medication he won't have to go through anything near as traumatic again.
God bless you all and thank you for the continued prayers!!
Emily & Rion
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